Alternatives to Guardianship Project
What's New   

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May 24, 2024
Report on New Federal Regulations Sent to Medical Rights Workgroup for Review

The Missouri Medical Rights Workgroup will be reviewing a report produced by Spectrum Institute on new federal regulations on disability discrimination by health care providers receiving federal funds.  The report will be discussed at the workgroup's meeting on June 18.  Once finalized, the report will be distributed to disability rights organizations, health care providers, and professional associations for hospitals and medical and mental health professionals.  It will also be sent to the deans of schools of medicine, dentistry, nursing, social work, and psychology.  Later in the year, key elements of the report will be included in educational materials for patients with developmental disabilities, family supporters, and health care providers who serve this patient population.  For a copy of the report, click here.

March 26, 2024
Outreach Underway to Missouri Hospitals

Public and private health care providers that receive federal funding, if they have 15 or more employees, are required by federal law to designate a staff person to coordinate compliance with the nondiscrimination provisions of Section 504 of the Rehabilitation Act of 1973.  The Affordable Care Act has a similar requiremnent for compliance with the nondiscrimination provisions of Section 1557 of that law.

There are 168 licensed hospitals in Missouri.  The Alternatives to Guardianship Project is contacting the larger hospitals (facilities with 100+ hospital beds) to alert management that the federal Department of Health and Human Services will be issuing a final rule in the coming weeks to update the disability nondiscrimination requirement of Section 504 with respect to the delivery of health care services by providers that receive federal funds.  For a copy of the flier we are sending these hospitals, click here.

February 21, 2024

AMA and Others Support HHS Rule Against Disability Discrimination in Health Care Services

The American Medical Association submitted a letter to the Department of Health and Human Services regarding its proposed rule under Section 504 of the Rehabilitation Act of 1973 to clarify prohibitions against disability discrimination by health care providers that receive federal funds.  The AMA generally supports most aspects of the new rule, noting: "The AMA believes firmly that discrimination has no place in the practice of medicine."  Other organizations expressing support include: National Academy of Elder Law Attorneys (NAELA); National Association of State Directors of Developmental Disability Services (NASDDDS); Association of American Medical Colleges (AAMC); National Health Council (NHC); Missouri Developmental Disabilities Council (MODDC).  We are awaiting word from the White House as to when HHS anticipates it will finalize the rule.  The Alternatives to Guardianship Project has analyzed the proposed rule for its impact on the medical decision-making rights of adults with developmental disabilities. 

February 7, 2024
National Data: Missouri is Overusing Guardianships

The National Core Indicators® – Intellectual and Developmental Disabilities (NCI®-IDD) is a voluntary effort by state developmental disability agencies to track their performance using a standardized set of consumer and family surveys with nationally validated measure.  An analysis of NCI data for several recent years reveals that Missouri adults with developmental disabilities are being placed into guardianships at a much higher rate than the national average.  A majority of families in Missouri are not being advised on alternatives to guardianship.  To read excerpts from the Missouri surveys with comparisons to national averages, click here

February 6, 2024
Federal Grants Support Medical Self-Determination

The U.S. Department of Health and Human Services has submitted a report to Congress describing a variety of federally-funded projects providing supoportive services to individuals with autism.  This report describes the supportive services that are beneficial to improved outcomes for people with autism, some of which are designed to reduce unnecessary guardianships and promote self-determination.  The grants are administered by the Administration for Community Living (ACL). ACL was created around the fundamental principle that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and with the ability to participate fully in their communities.   For a summary of the projects that are most related related to medical self-determination, click here

February 6, 2024
Missouri Lagging on Alternatives to Guardianship

The National Council on Disability reports that Missouri is among the top three states with the highest percent of adults with developmental disabilities who have been ordered into a guardianship.   Missouri guardianizes such adults at a rate 15 times greater than Delaware, 8 times greater than South Carolina, and nearly 5 times greater than Georgia. 

To read a commentary about how educators, health care professionals, judges, and attorneys are contributing to the overuse of guardianships in Missouri, and how more education is needed to minimize unnecessary guardianships, click here.

January 20, 2024
Journal Article Published on Dental Ethics and Disability Discrimination

Helen, the official journal of the American Academy of Developmental Medicine and Dentistry, has published an article in its January 2024 edition titled: "How Dentists are Prohibited from Disability Discrimination."  The article cites relevant laws as well as provisions of the code of dental ethics.  It also mentions the work being done by the Alternatives to Guardianship Project in Missouri.  To read the article, click here

January 17, 2024
Medical Rights Workgroup Meets Jan 23 and 26

Stakeholders representing a wide range of interests will meet during the week of January 22 to explore ways to better protect the medical rights of patients with developmental disabilities while also respecting the legal and ethical duties of health care providers.  Click here for access to a webpage for the workgroup.

Participants include self-advocates, parents, health care practitioners and administrators, disability rights advocates, university professors, and government regulators.  The fields of medicine, psychiatry, nursing, dentistry, social work, protective services, disability services, and law are represented.

Some 21 members will meet on Jan 23 while 8 pof them will meet on Jan 26. 

To read the orientation letter sent to workgroup members, click here.  For a factsheet about the workgroup, click here.  For a list of participants, click here.

October 4, 2023
Medical Rights Workgroup Forming in Missouri

The American Academy of Developmental Medicine and Dentistry, Spectrum Institute, and the Alternatives to Guardianship Project are convening a workgroup to explore medical decision-making options available to adults with developmental disabilities.

Workgroup participants will include a wide range of stakeholders in Missouri, including self advocates and parent advocates, as well as representatives from disability rights advocacy groups, disability services organizations, state and local government agencies, and professional and trade associations representing the interests of a variety of health care providers.

The workgroup will identify ways in which patients, families, and providers can work together to protect the medical rights of this patient population while also respecting the ethical and legal duties of health care professionals. For more information, click here

September 26, 2023
AADMD's Magazine Features an Article on Medical Rights of Patients with Developmental Disabilities

Helen is the official magazine of the American Academy of Developmental Medicine and Dentistry (AADMD).  The September issue of Helen included an article on medical decision-making rights written by Thomas F. Coleman, legal consultant to the Alternatives to Marriage Project.  Helen is proud to "feature evidence-based best practices, advice to navigate the ability lifestyle, tools for advocacy & more." The journal "represents the cross-specialties composed of healthcare, education and policy makers along with the disability community (families, self-advocates and caregivers)."  To read or download the article, click here.  For a free subscription to Helen, click here.  To read past issues, click here.

September 12, 2023
Report:  HHS Publishes Proposed Federal Rule on Disability Discrimination by Federally Funded Health Care Providers
Spectrum Institute has produced a new report for the Alternatives to Guardianship Project.  The report comments on a proposed rule by the federal Health and Human Services Department clarifying prohibitions on disability discrimination by hospitals, doctors, dentists, and other health care providers who receive federal funds.  The rule affirms the rights of adult patients with mental or developmental disabilities and specifies the duties of providers with respect to this patient population. The report will help providers to comply with federal law.  It also provides guidance to patients and their families or other supporters who may want to file complaints with HHS for any nonpompliance.  For a copy of the report, click here.  

The report was sent to: Missouri Hospital Association, Missouri State Medical Association, Missouri Psychiatric Physicians Association, Missouri Association of Osteopathic Physicians and Surgeons, Missouri Nurses Association, Missouri Dental Association, Missouri Pharmacy Association, Missouri Psychological Association, Missouri Chapter of the National Association of Social Workers, Missouri Health Care Association, Missouri Primary Care Association, Missouri Health Information Management Association, Missouri Association of Local Public Health Agencies, Missouri Society of Health Care Attorneys, Community Health Workers Association,
Missouri Rural Health Association, and the Missouri Behavioral Health Council.

September 8, 2023
Appeals Court Accepts Legal Brief from Alternatives to Guardianship Project and Others

The Appellate Division of the New Jersey Superior Court entered an order today accepting a friend-of-the-court brief filed by the Alternatives to Guardianship Project and nine other organizations.  The brief urges the court to issue an opinion that not only protects the medical rights of Peter Brumlik, a young college student on the autism spectrum, but gives guidance to judges and attorneys in other cases involving adults with developmental disabilities who become entangled in guardianship proceedings.  For information about the participating organizations, click here.  To read or download the brief, click here.  (Photos:  (from left to right) Peter with his father; Peter; Peter and his friend Eric on a hiking trail in New Jersey)

July 6, 2023
Guidance for Patients, Families, and Providers
on Medical Decision-Making


A comprehensive guidebook on the medical decision-making rights of adult patients with developmental disabilities is now available.  It has information for patients, families, health care providers, state agencies, and professional associations.  The book includes an annotated bibliography of relevant state and federal statutes, regulations and court cases.  To access the guidebook, click here.

June 21, 2023
New Resource: Rainbow Support Group Guidebook
"Our Lives, Our Choices, Our Rights" is a guidebook about people with developmental disabilities who identify as LGBTQ+.  It is written by people with developmental disabilities primarily for supporters, families, and service providers. Information in the guidebook is based on the personal and professional experiences of the authors, as well as interviews with 23 other LGBTQ+ adults with intellectual and developmental disabilities.  The guidebook has 12 chapters, including those on gender and sexuality, human rights, and sex education.  A list of valuable and informative resources is also provided.  To access the guidebook or to watch a short (4 min.) video about it, click here

June 13, 2023
Transitioning to Adulthood: Resources for Patients, Parents and Medical Providers

This annotated bibliography directs readers to a variety to resources to help patients with developmental disabilities have an effective and meaningful relationship with doctors, clinics, and hospitals.  While some materials are helpful to patients of any adult age, most of them are geared for teens who are preparing to assume primary responsibility for their medical care once they become adults.  The bibliography has four sections:  For Patients, For Parents, For Providers, and Research.  To access this document, click here

May 1, 2023

Medical Associations Receive Report on Patient Decision Making Options

The Alternatives to Guardianship Project has sent a report on decision-making options for patients with developmental disabilities to medical associations and disability rights stakeholders in Missouri.  The report explains that such decision making should not be an all (independent) or nothing (guardianship) proposition.  Other options exist for medical professionals to receive informed consent for medical services and medications.  Medical and disability stakeholders were invited to work with us in identifying ways to improve the medical decision-making evaluation process and to better protect the rights of this patient population.  For a copy of the report, click here.

April 13, 2023
Exploring the Role of Psychologists and Social Workers in Guardianship Evaluations

Legislation passed in 2018 requires Missouri courts to thoroughly examine whether guardianship respondents are partially or fully incapacitated and, if so, to evaluate whether less restrictive alternatives to guardianship would ensure their safety.  The court may appoint a licensed psychologist or other professional to conduct these assessments.  Psychologists are appropriate to evaluate mental capacity.  Social workers are appropriate to determine whether supports and services are available in the community to assist an adult with decision-making and therefore avoid the necessity of a guardianship.  The Alternatives to Guardianship Project has invited officials at the Missouri Psychological Association to communicate with us about the role of psychologists in the capacity assessment process.  We have reached out to the Missouri Chapter of the National Association of Social Workers to discuss the role of social workers in guardianship proceedings.

April 12, 2023
Reaching Out to Nursing, Medical and Hospital Associations

The Alternatives to Guardianship Project has invited associations representing physicians, nurses, and hospitals in Missouri to explore medical decision-making options for adults with developmental disabilities.  More than 73,000 adult patients in Missouri have such disabilities. Most of them are not living under an order of guardianship.  Options for those not in a guardianship include a power of attorney for health care, a health care proxy, and a medical supported decision-making agreement.  We eagerly await a response from the Missouri State Medical Association, the Missouri Nurses Association, and the Missouri Hospital AssociationUpdate (4-20-23)  The medical association has accepted our invitation to discuss this important issue. 

April 10, 2023
Adding Health Care Proxies to Medical Toolkit

When it comes to medical decision-making, it is not one-size-fits-all for adults with developmental disabilities.  Some can make their own medical decisions without help.  Others need supported decision-making.  Some have the capacity to delegate decision-making authority to others through a standard medical power of attorney.  But these tools are not practical for some adults with developmental disabilities who have limited capacity to give informed consent for medical procedures.  And yet, despite having diminished mental abilities, such adults may have capacity to designate  a trusted person to act as a surrogate for medical decision-making.  We suggest that new legislation be developed in Missouri authorizing health care proxies for adults with developmental disabilities, such as has been done in Utah and Vermont.  To read or download our proposal, click here.   

April 8, 2023
Outreach to Missouri Law Schools 
 Spectrum Institute has written to the deans of four law schools in Missouri -- Washington University, St. Louis University, University of Missouri, and University of Missouri at Kansas City -- to open a conversation regarding internship opportunities for law students with nonprofit organizations promoting reforms to the adult guardianship system in that state.  Students would conduct research into the processing of such cases to identify systematic violations of state and federal laws that harm the rights of adults with mental and developmental disabilities. Results of the research would be used to file administrative complaints with state and federal agencies, to educate the Missouri Supreme Court, and to inform the development of new legislation to provide additional safeguards for this vulnerable population.  For a copy of the communication to the law school dean at Washington University, click here.  Similar letters were sent to the other three deans.

April 6, 2023
Missouri Supreme Court Urged to Seek Federal Grant

The Alternatives to Guardianship Project sent a letter to Missouri Chief Justice Paul Wilson today.  It urged the Supreme Court to apply for a guardianship improvement grant from a federal agency known as the Administration for Community Living.  The letter explained that supreme courts in several other states have received substantial funding to review and improve their adult guardianship systems.  The letter also informed the court that funds may be approved by Congress under a pending bill to recruit and train law students to assist with legal advocacy for adults who are respondents in guardianship proceedings.  Law students could help court-appointed lawyers explore and develop alternatives to guardianship such as supported decision-making.  Copies of the letter are being sent to deans of the four law schools located in Missouri.  To read the letter, click here.  (Photo: Chief Justice Wilson)

March 30, 2023
U.S. Senate Committee Holds Hearing on Guardianship Alternatives

The Select Committee on Aging of the United States Senate held a hearing today, taking testimony from experts and victims of guardianship abuse on how the federal government can prod the states to use les restrictive alternatives to guardianship, such as supported decision-making.  Witnesses stressed that guardianship should be a last resort, not a first choice or default position for adults with mental or developmental disabilities.  Spectrum Institute submitted recommendations to the committee in advance of the hearing.  To view a video of the proceedings, click here.  Those who would like to share stories about guardianships or offer recommendations for reform may have their remarks placed in the record of the hearing if the committee receives them by April 7.  Send comments to: 

As a follow up to the hearing, Sen. Casey introduced a bill to create a national advisory council to promote alternatives to guardianship and to collect data from the states on existing guardianships.  In addition, it would provide funding for state to have a protection and advocacy agency focused on the rights of people being considered for and living under a guardianship. This network of state agencies would be built upon the existing network of protection and advocacy agencies authorized by the Developmental Disabilities Act of 2000.  For more information on S1148, click here.

March 4, 2023
Marriage Rights: Legal Authorities and Current Practices

The freedom to marry has long been recognized as one of the vital personal rights essential to the orderly pursuit of happiness.  That is why the freedom to marry is constitutionally protected.  But for adults with developmental disabilities, a variety of barriers often block their access to marriage.  Obstacles to marriage include overly restrictive definitions of "capacity to marry," the failure of schools and service providers to educate teens and young adults about the benefits and obligations of marriage, and economic penalties that may be imposed by federal and state benefits programs on those who choose to marry.

This report explains the legal basis for the freedom to marry for adults with developmental disabilities. It also makes recommendations on how the State of Missouri can assist such adults in making that right become a reality.  Although this report focuses primarily on Missouri, it contains information that would be relevant to any state. To read or download the report, click here.

February 27, 2023
Sexual Rights: Legal Authorities

As a companion document to the bibliography on sexual rights, a memo is now available explaining the legal authorities supporting the freedom of intimate association guaranteed by the constitution to consenting adults, including those who have developmental disabilities.  The abstract to the memo explains: "Adults with developmental disabilities – regardless of gender, marital status, or sexual orientation – deserve the same opportunity to experience sexual relationships as adults without disabilities. This legal report on the parameters of the freedom of intimate association, along with the related bibliography of academic and professional literature, are intended to provide a better understanding of the sexual rights of adults with developmental disabilities. Such an understanding should lead to an informed and balanced approach to a sensitive topic."  To access the legal memo, click here.

February 20, 2023
Sexual Rights: Annotated Bibliography

A 47-page bibliography of academic and professional literature is now available containing policy statements, reports, and articles on the sexual rights of adults with developmental disabilities.  The bibliography offers those with a sincere interest in this topic access to a wide range of literature on which to build a new set of policies and protocols that will respect and protect the sexual rights of adults with developmental disabilities in Missouri or elsewhere.  To access the bibliography, click here.

February 14, 2023
Social Rights: First of Three Reports

Social Rights of Adults with Developmental Disabilities explains the legal basis for the rights that such adults have in connection with their social decisions, activities, and relationships.  It focuses on provisions
in the constitutions of the United States and the State of Missouri, as well as various federal and state statutes.  The report is written for the benefit of self-advocates, parents, service providers, and state agencies charged with protecting the rights of people with developmental disabilities.  It is also intended to educate judges, court-appointed attorneys, and guardians involved in adult guardianship proceedings.  To access the report, click here.  A more user-friendly booklet will be produced in the near future for self-advocates.

A second report will focus on the sexual rights and responsibilities of adults with developmental disabilities.  A third will concentrate on the right to marry.

Once these legal reports are published, the Capacity to Love Project will survey and analyze how school districts are educating teenagers and young adults on these issues, what the Division on Developmental Disabilities has to say about them, and the extent to which participants in guardianship proceedings are being educated on these topics.  The project will also survey what actions have been taken by developmental service agencies in other states, such as Massachusetts, to produce resource materials on topics related to disability and sexuality.

February 9, 2023
Capacity to Love Project is Launched

Capacity to Love is a project focusing on the social and sexual rights and responsibilities of adults with developmental disabilities, regardless of sexual orientation or gender identity.  Capacity to Love promotes the education and counseling of adults with developmental disabilities about their social and sexual rights and responsibilities. It also promotes the education of guardians, court-appointed lawyers, care providers, and adult protective service workers of their duty to respect these rights – appropriately considering the interests of such adults in both freedom of choice and freedom from abuse.  For more information, click here. Capacity to Love is a function of the Alternatives to Guardianship Project in collaboration with Spectrum Institute.  It is endorsed by the Missouri Developmental Disabilities Council.


January 25, 2023
Supported Decision-Making: Options for Missouri

With assistance from Spectrum Institute and funding from the Missouri Developmental Disabilities Council, the Alternatives to Guardianship Project has released a new report promoting the use of supported decision-making (SDM) as an alternative to adult guardianships in Missouri.  The report provides a framework to stimulate conversations among stakeholders and strategic planning by advocates for new legislation in Missouri to make SDM and other less restrictive alternatives to guardianship for people with mental and developmental disabilities a viable and practical reality rather than a theoretical possibility.  The report is being widely distributed throughout the state.  The options it presents will become the basis for a series of zoom forums later this year to encourage feedback and suggestions. The report and the community evaluation process should be valuable to legislators as they consider introducing or supporting SDM legislation.  For a copy of the report, click here.

December 31, 2022
Year-End Update on Project Activities

In addition to the research and educational activities found on the "what's new" page regarding policies and practices on guardianship and alternatives, the project has also been engaged in consultation and training activities with individuals who have developmental disabilities and their families.  For a summary of those activities click here.

December 1, 2022
ADA Educational Materials Sent to Missouri Courts

An annotated bibliography prepared by Spectrum Institute for the Alternatives to Guardianship Project was sent today to ADA Coordinators at the Supreme Court, State Courts Administrator, and circuit courts throughout the State of Missouri.  A copy was also sent to The Missouri Bar.  The document is titled "How the ADA Applies to Guardianship Proceedings: A Primer for Missouri's Judges, Attorneys, and Guardians."  The letter transmitting the document invites bench officers, administrators, and court staff to review current policies and practices in adult guardianship proceedings through the lens of what the Americans with Disabilities Act actually requires.  Another document containing findings of ADA noncompliance by the guardianship system and recommendations to bring it into conformity with federal law will be released and sent to Missouri officials in all three branches of government next year.  UPDATE: Jan. 3, 2023.  An email was sent today to the ADA coordinators of courts throughout Missouri with a request that they forward an attached report to the justices, judges, and court administrators.  The report contains recommendations on how the judicial branch can improve access to justice for litigants with mental and developmental disabilities in legal proceedings, especially adult guardianship proceedings.

November 18, 2022
DOJ Starts Investigation of Missouri's Guardianship System

The United States Department of Justice issued a press release on November 16, 2022 announcing that it has opened an investigation under the Americans with Disabilities Act to determine whether Missouri's use of guardianships for people with serious mental illness contributes to unnecessarily restrictive placements in skilled nursing facilities.   The press release encouraged anyone with relevant information to contact the DOJ.

In response to the request for information, Spectrum Institute sent a written communication to the Civil Rights Division offering to share the results of its own multi-year investigation showing a pattern and practice of ADA violations in Missouri's guardianship proceedings.  Thomas F Coleman is the legal director of Spectrum Institute and has been acting as a consultant to the Alternatives to Guardianship Project.  He has been working on a major report for the project titled "How the ADA Applies to Guardianship Proceedings: A Primer for Missouri’s Judges, Attorneys, and Guardians."  The report and an annotated bibliography on the subject will be sent to the Supreme Court and circuit courts throughout Missouri in January 2023. 

Update: (1-29-23)  Spectrum Institute filed an ADA complaint with the DOJ on January 12, 2023 alleging that the adult guardianship system is operating in violation of federal law on a wide range of issues. The DOJ acknowledged receiving the complaint.  On January 26, Viviana Bonilla-Lopez, a trial attorney with the Special Litigation Section of the DOJ, interviewed Thomas F. Coleman, legal director of Spectrum Institute, to learn additional details about the ADA complaint.  Prior to her employment with the DOJ, Ms. Bonilla-Lopez (photo) acquired experience in promoting alternatives to guardianship, including supported decision-making, as a disability rights fellow with Equal Justice Works in Florida.  She is heading up the investigation in Missouri described in the press release referenced above.

November 13, 2022
Networking at The Arc National Conference

Thomas F. Coleman attended the national conference of The Arc of the United States in Denver from November 10 - 12.  Tom distributed a handout about issues being addressed by the Alternatives to Guardianship Project.  He attended a presentation on sexual self advocacy by Elevatus Training which shared resources that will be helpful to the Capacity to Love project that will be launched in Missouri next year.  He also attended a breakout session on supported decision-making sponsored by The Tennessee Center for Decision-Making Support which is a well-developed program that could be adapted for use in Missouri.  Tom spent time exchanging information with attendees such as Michael Cormier, founder of 3rd Circle Inc. -- a nonprofit in Michigan providing a wide range of supports for people with disabilities in residential settings.  He also enjoyed meeting and exchanging views with Shawn Kennemer, President of the Bakersfield Arc and newly appointed member of the National Council on Disability.  Tom's husband, Michael Vasquez, accompanied him to the conference, providing logistical and other support throughout.  The trip was made possible by a generous donation from Richard W. Smith, Ph.D.

November 3, 2022
Public Guardians Lack Adequate Funding and Staff 

We recently reached out to the Missouri Association of Public Administrators (MAPA) for information about their role as guardians for adults with mental or developmental disabilities.  Danielle Boggs, president of the association, sent us a report with information relevant to our study.  The report contains findings and recommendations which will help us identify ways to improve the guardianship system in Missouri. 

Public administrators (PAs) throughout the state serve as guardians for 11,000 of the 30,500 adults in Missouri who are living under an order of guardianship. (p.2) One-third of their caseload consists of adults with intellectual or developmental disabilities. (p. 19) While national professional standards call for a ratio of one guardian per 20 protected adults, public administrators in Missouri, on average, have a ratio of one guardian to 90 adults.

In terms of less restrictive alternatives, the report stated: "PAs often do not have the bandwidth for limited guardianship or supported decision-making, even when it is preferable. Guardianship is perceived by some system stakeholders as a loss or reduction of the ward’s independence and rights. However, without appropriate resources to spend additional time in decision-making with wards, PAs cannot easily afford partial rights to wards." (p. 15)

We will be studying this report further, including the findings regarding inadequate funding, as we develop a comprehensive report focusing on all parts of the system and all participants, including the public administrators who are doing the best they can with limited resources to protect and assist vulnerable adults.

November 2, 2022
The Perils of Judicial Control of Guardianship Legal Services: Time for a New Model in Missouri

The Alternatives to Guardianship Project recently reviewed the dockets in hundreds of guardianship cases in 10 circuit courts throughout Missouri.  Our findings are as concerning as they are enlightening.  What we discovered is explained in a commentary we are sending to the Supreme Court, State Courts Administrator, Circuit Courts, and the State Bar.  We are also sending it to other agencies and organizations with an interest in improving the administration of justice in adult guardianship proceedings:  Missouri Developmental Disabilities Council, MO-WINGS, Department of Mental Health, Missouri Association of Public Administrators, Missouri Protection and Advocacy; and the Missouri Association of Probate and Associate Circuit Judges.

We hope the commentary will stimulate a conversation resulting in action to bring about the reforms necessary to ensure access to justice in guardianship proceedings for adults with mental and developmental disabilities.  Legislative reforms adopted in 2018 were a good start, but only a start.  Much more needs to be done to ensure that alternatives to guardianship are thoroughly explored by court-appointed attorneys and probate judges.  And major changes need to be adopted and implemented to ensure that adults are not abandoned, for all practical purposes, by the courts and court-appointed attorneys the moment an order of guardianship is granted.  The 30,000 adults living under an order of guardianship are not being given meaningful participation in these ongoing cases as required by the American with Disabilities Act. 

Court-appointed attorneys in Missouri are left to their own devices in terms of the scope and methods they use in representing clients in adult guardianship proceedings.  In addition to the lack of specialized training (see posting for October 31, 2022), these attorneys are not given performance standards to guide them in zealously advocating for their clients and defending their rights.  In sharp contrast to the improvisation that seems to be occurring in Missouri's guardianship courts, Massachusetts gives guardianship attorneys in that state specific performance standards to follow, with a checklist of minimum activities that should be performed in each case.

The commentary calls attention to a model legal advocacy program that has been operating in Nevada for several years -- a program that should be considered for Missouri.  To read the commentary, click here.

November 1, 2022
Retention of Voting Rights Varies Widely by County 

 After reviewing months of court records in guardianship proceedings in three counties in Missouri in 2021, we discovered a major discrepancy in the percentage of adults who retain the right to vote when they are ordered into a guardianship.  In Platte County, 100% of guardianship orders in 2021 stripped such adults of the right to vote.  In Jackson County, examining a two-month sample in 2021 showed that some 84% had their voting rights removed.  In contrast, in Jasper County, over a six-month period in 2021 only 46% had their voting rights taken away.
State and federal laws come into play in these cases.  The federal voting rights act prohibits states from depriving adults of the right to vote because they cannot read, write, or understand the nuances of voting.  The federal Americans with Disabilities Act requires states to modify state laws and provide reasonable accommodations to assist disabled adults to vote.  The ADA applies to adults with mental and developmental disabilities.  We plan to expand our research into local practices to verify the practices of courts in other counties.  It appears there is a need to educate judges and court-appointed attorneys about the mandates of federal laws and how they supersede state laws that discriminate on the basis of disability. 

State legislators should consider implementing voting rights reforms accomplished in California in 2016 after the federal Department of Justice opened an investigation into the widespread denial of voting rights of conservatees in that state.  Now, under SB 589, the only criteria in California for denying a conservatee of the right to vote is a showing, by clear and convincing evidence, that the person cannot communicate, with or without reasonable accommodations, a desire to participate in the voting process.  Prior to the passage of SB 589, nearly all conservatees lost the right to vote.  Now, with a presumption of capacity to vote and the burden of proof so high to deny voting rights, most conservatees retain the right to vote.           

October 31, 2022
No Special Training Requirements for Guardianship Attorneys and Judges 

 Adults against whom guardianship petitions are filed have mental or developmental disabilities which make legal representation more challenging than ordinary civil cases where clients can effectively communicate with lawyers and participate in setting goals and developing strategies to achieve the desired outcome.  In guardianship cases, fundamental freedoms are at risk.  Litigants may have trouble understanding or communicating.  Accommodations under the Americans with Disabilities Act come into play.  Capacity must be assessed by qualified professionals.  Less restrictive alternatives should be explored.  To provide effective representation to these special needs clients, whether they are seniors or adults with developmental disabilities, appointed attorneys must deal with a matrix of complex issues.  One would think that the State Bar of Missouri would mandate special training for these attorneys just as other states have done.  One would also think that the judges who decide the fate of these clients would have special training requirements, just as the judges who handle family law matters in Missouri do. 

A recent email we received from the State Courts Administrator disclosed that there are no education or training requirements for guardianship judges and attorneys in Missouri. That was the case in California until 2019 when the Judicial Council adopted a court rule mandating training for court-appointed attorneys in probate conservatorship proceedings.  These attorneys must receive continuing education on constitutional rights, the ADA, capacity assessments, and less restrictive alternatives in order to be qualified for appointments to these cases.  The Texas Supreme Court issued an administrative order in 2017 requiring judges who presiding over guardianship cases to receive training in the following areas:  the aging process and the nature of disabilities;  requirements of the ADA and compliance methods; principles of equal access and accommodation; and the use of community resources for people with disabilities.  Maryland's highest court has gone even further by issuing an order that defines the role of court-appointed counsel and establishes performance standards, in addition to mandating training related to these cases.  Missouri can look to these and other states to develop training requirements for judges and attorneys who participate in guardianship cases.

 We will be developing proposals to submit to the Missouri State Bar and Supreme Court for continuing education requirements for guardianship attorneys and judges so that respondents with mental and developmental disabilities receive effective assistance of counsel and the administration of justice by properly trained judges.          

October 25, 2022
Jackson County Public Administrator is Interviewed 

 John Killian is the Public Administrator of Jackson County, Missouri.  He was appointed to the position by the Jackson County Circuit Court. The Public Administrator is currently serving as the guardian of approximately 1,050 adults.  About 30% of these persons are adults with developmental disabilities. The Public Administrator is appointed as guardian in about one-third of the guardianship cases in the Jackson County Circuit Court.  The Office of the Public Administrator has 30 employees, including five attorneys, 10 case managers, and a variety of clerical staff positions.  Mr. Killian was very open and cooperative in answering our questions.  Details of the interview will be included in a future report.

October 15, 2022
Supreme Court Clerk and State Courts Administrator Respond to Records Requests 

Jennifer Hulme, director of the Alternatives to Guardianship Project, sent records requests on September 27, 2022 to the Clerk of the Supreme Court as well as to the State Court Administrator.  In the requests, she explained:

"The Alternatives to Guardianship Project is in its early stages.  Foundational to our government-funded study is to gain knowledge of some basic census data about open cases and new petitions.  Adequacy of funding and staffing, and planning judicial budgets for these cases, depends on accurate data of this type.

"We are seeking to determine if the judicial branch in Missouri knows how many people it is protecting in guardianships, if it has the data to prepare and plan future budgets, and whether it has the data to determine trends.  The records we seek will help us answer those questions.

"The issue of records on such matters is not unique to Missouri.  I am attaching a legal commentary that was published three years ago in the Daily Journal legal newspaper in California.  The issues raised in that article would equally apply to Missouri."

The Project reviewed the annual report of the 16th Judicial Circuit and noted that data for guardianships is sparse.  Adult and minor guardianships are mixed together.  The number of new adult petitions filed in 2021 is not ascertainable, nor can it be determined how many adults are currently under the protection of the court. There is no data for type of disposition, such as whether cases were dismissed for lack of proof, settled by agreement, or whether there were trials or evidentiary hearings.  There is no data on the value of property under the protection of the court.  

Update: (10-15-22)  We received responses to our records requests from the Supreme Court and the State Court Administrator.  The Court Clerk stated that the Court does not have the data we were seeking.  The Administrator, however, provided data responsive to our request. 

According to the Administrator, there have been an average of about 3,000 new adult guardianship petitions filed each year for the past four years. 

Update:  Some 2,991 new cases were filed in 2022.

At the end of 2021, there were 30,537 active guardianship cases in the state, reflecting an increase of 2,121 active cases since 2018.


Update:  There were 32,694 open cases at the end of 2022.

Update: (10-19-22)  A new records request was submitted to the Office of State Courts Administrator asking for materials regarding the education and training of judges, court appointed attorneys, and guardians regarding their role in adult guardianship proceedings and their duties under the Americans with Disabilities Act. To read the request, click here.

October 14, 2022
Supreme Court Responds to ADA Records Request

Spectrum Institute sent an administrative records request to the Missouri Supreme Court on September 26, 2022.  The request sought records on: (1) the Court's ADA policies; (2) any self-evaluation done by the Court on its ADA policies and practices; and (3) its grievance procedure to process complaints that its policies or practices do not comply with the requirements of federal law.  Obtaining these records is a prerequisite to a proper evaluation of whether the courts in Missouri are meeting their obligations to ensure that litigants with mental or developmental disabilities are receiving access to justice in guardianship proceedings and meaningful participation in these liberty-encroaching cases.  For a copy of the request, click here.

Update (10-14-22)  The Clerk of the Supreme Court responded to our request for ADA-related records through a letter that attached two documents: (1) policy on access to courts; and (2) Supreme Court's ADA grievance procedure.  The letter also directed our attention to a webage addressing "disabled access" to court buildings. 
The letter concluded by stating that "this Court does not have any records pertaining to self-evaluations performed pursuant to 28 C.F.R. § 35.105 regarding adult guardianship proceedings or any other judicial proceedings."  We independently found a webpage on the judicial branch website pertaining to general policies of the Missouri Courts regarding the ADA and disability nondiscrimination.  That webpage states: "In accordance with the ADA, the Missouri judiciary will not discriminate against qualified individuals with disabilities in its services, programs or activities."  It also provides a list of ADA coordinators for each court in the state to which individuals may direct requests for accommodations.  We were unable to find anything on the judicial branch website regarding the obligations of courts, even without a request, to provide accommodations to litigants with known or obvious disabilities.  The policies and practices of the judicial branch appear to be premised on the need for a request despite the fact that federal law states otherwise. 

October 5, 2022
Interview with Probate PJ in Jackson County

Thomas F. Coleman, consultant to the Alternatives to Guardianship Project, interviewed the Honorable Mark A, Styles, Presiding Judge of the Probate Division of the Jackson County Circuit Court.  Judge Styles was very cooperative and provided information that is helpful to understanding the current policies and practices of that court related to adult guardianship proceedings.  According to Styles, his court has the third largest caseload of adult guardianship cases in the state, with St. Louis County having the highest caseload and St. Louis City the second.  He estimates that about 400 new petitions are filed in his court annually and that the court is protecting about 5,000 adults who are currently living under an order of guardianship.  There is one attorney who is appointed by the court to represent respondents. Three bench officers, Styles and two commissioners, process new and active cases. In addition to adjudicating the merits of the 400 new petitions, they must review and approve 5,000 annual reports filed by guardians. Information obtained during this interview will be included in a report on judicial proceedings that will be issued in the future by the project. 

September 8, 2022
Duties of Appointed Counsel: Policy vs. Practice

The sentence in the box to the left is taken from an excellent article published this year in the St. Louis Bar Journal.  Titled "Due Process and Best Interests: The Challenges of Guardianship Cases," the article is written by Heather Hall and Josh Rose.  Both are attorneys whose practice includes cases in which they are appointed by the court to represent adults living under an order of guardianship or who are targeted by a guardianship petition. 


The article spells out in considerable detail the rights of such adults in guardianship proceedings.  One of them is the right to have counsel who advocates for their wishes and protects their rights.  One such right is to have appointed counsel seriously explore less restrictive alternatives and to argue for such, including demanding an evidentiary hearing or jury trial on the matter if necessary.  What the article does not address, however, is the extent to which such attorneys are doing this in actual practice.  Nor does it address how attorneys are impeded in providing such advocacy because they are often paid a flat fee of a few hundred dollars which, in effect, puts them in a bind and creates an actual or apparent conflict of interest.  Put in three hours and earn about $150 per hour or put in more hours and perform the extra work for free.   


The Alternatives to Guardianship Project will be investigating how many lawyers serve as appointed counsel in Missouri, how they are trained, if they have performance standards to meet, how much they are paid, and what system of monitoring exists to ensure that clients who generally cannot identify deficient performance (ad therefore cannot complaint about malpractice) receive the quality of representation that due process and the Americans with Disabilities Act would require.  It will also examine the duties of the state and of counties to allocate sufficient funds to enable attorneys to provide effective assistance to indigent clients and steps that public entities can take to increase the level funding for guardianship legal defense and advocacy services. 

September 7, 2022
Supreme Court Asked about Status of ADA Complaint

The Alternatives to Guardianship Project has sent a letter to the Missouri Supreme Court inquiring into what actions, if any, it took in response to an ADA complaint filed by Spectrum Institute with the Court in 2017.  The complaint alleged that the state's adult guardianship system was out of compliance with requirements of Title II of the federal Americans with Disabilities Act.  The court clerk acknowledged receipt of the complaint in 2018, indicating that it was "under review" by the Court.  Despite a follow-up inquiry by Spectrum Institute in 2019, the organization never heard from the Court on the matter again.  This outreach to the Court by the Project is part of its due diligence to determine what actions have been taken by any officials or public entities to improve the administration of justice in guardianship proceedings.  To read the letter from the Project to the Court, click here.  To read the ADA complaint and related materials, click here.


Update: (9-24-22)  We received a reply from the general counsel to the Supreme Court indicating that the Court did not take any action in response to the ADA complaint from Spectrum Institute, explaining that it wanted to see how a new law would be implemented.  However, the letter indicates that the Court is open to receiving additional materials for consideration on the subject.  We passed this information on to Spectrum Institute and have been informed that it will be providing the Court with additional materials on the application of the ADA to adults guardianship proceedings.

September 6, 2022
Analysis of Missouri's Policies and Practices is Underway

The Alternatives to Guardianship Project has initiated an analysis of the policies governing Missouri's adult guardianship proceedings as well as the practices of judges, attorneys, and a variety of professionals who are involved in these cases.  Policies include statutes, court rules, appellate rulings, and training programs for judges and attorneys.  Practices pertain to how the system operates in real life.  This research is foundational to the mission of the project.  We will identify areas where policy is good or deficient.  We will compare Missouri's policies on guardianship and alternatives with those in other states, especially in places where reforms have occurred.  We will also identify areas where actual practices do not conform to existing policies.  In addition, we will endeavor to obtain a census of adults under guardianship and demographics showing who they are.  All of this will eventfully be included in an action report which will contain our findings and recommendations.

August 31, 2022
Project to Review SDM Laws in California and Elsewhere

The California Legislature gave final approval in August 30 to a bill that will: (1) require alternatives to conservatorship to be seriously considered by petitioners and ruled out as unfeasible by the court; (2) strengthen the rights of adults living under an order of conservatorship; (3) give conservatees the right to petition for termination once a year and to have an attorney appointed to assist them if they inform the court of the desire to terminate.  After an appropriation of funds by the legislature, courts will be required to operate self-help centers to explain and help petitioners explore less restrictive alternatives such as supported decision-making and powers of attorney.  There were no dissenting votes in either the Senate or Assembly.  The bill is expected to be signed into law by the governor in September and will take effect on January 1, 2023.  To read the Assembly Floor Analysis of the bill, click here.  The Alternatives to Guardianship Project will be analyzing how provisions of AB 1663 can be adapted for use in Missouri.  The project will also analyze and compare SDM laws in New York (see below) and those in Texas (2015), Delaware (2015), Wisconsin (2018), North Dakota (2019), Rhode Island (2019), Indiana (2019), Nevada (2019), Washington (2020), Louisiana (2020) and Colorado (2021).



August 30, 2022
New York SDM Law to be Analyzed



The Governor of New York signed into law a supported decision-making statute on statute on July 26, 2022.  The law finds that adults with mental and developmental disabilities are often denied the right to make decisions based on stigmas and outdated beliefs about their capabilities.  It recognizes that supported decision-making can be a less restrictive alternative to guardianship.  It expresses a public policy to encourage the use of supported decision-making arrangements when they are feasible.  An analysis of capacity shall take into account capacity with decision-making support or accommodations.  The statute also defines supported decision-making, the role and duties of a support person, and the requirements for creating such an agreement.  To read the new law, click here.  The project will be analyzing the bill to determine if elements of it may be adapted for use in Missouri.



August 25, 2022
Project to Include a Mental Health Component


Many adults with developmental disabilities have concurrent mental health challenges and illnesses.  Failure to address and treat these conditions may impair the feasibility of implementing alternatives to guardianship such as supported decision-making.  The same is true for adults with developmental disabilities who are living under an order of guardianship.  Treatment of adverse mental health conditions may be a necessary prerequisite to terminating a guardianship in favor of a less restrictive alternative.


It is therefore important to educate adults with developmental disabilities, their families, medical and mental health professionals, service providers, attorneys, and judges about the adverse consequences of failing to provide prompt and appropriate mental health services to such adults as an essential component of enabling them to exercise their right to self determination and to avoid or terminate otherwise unnecessary guardianships.


Tina Baldwin is the director of the Mental Health Project of Spectrum Institute.  She oversaw the development of a recent report on the consequences to adults with developmental disabilities when necessary mental health services and therapy are delayed or denied.  Tina will serve as a consultant to the Alternatives to Guardianship Project and Hulme Resources to educate stakeholders in the guardianship system in Missouri about these consequences and how to enhance mental health services for this population in order to avoid them.  The first steps will include an assessment of the availability of mental health services for adults with developmental disabilities in the state, whether they are in a guardianship or not, and to solicit suggestions from stakeholders on how to make such services more accessible and more responsive to the needs of this population.


August 11, 2022
Outreach to Department of Mental Health

A letter was sent to Valerie Huhn, Director of the Missouri Department of Mental Health.  The letter inquires whether the Department would consider convening a workgroup to review the application of the ADA Olmstead principles to adults guardianship proceedings.  It calls attention to the following statement on the Department's website: “Title II of the ADA requires that any entity administering public funds must ensure services, programs, and activities are provided in the most integrated setting appropriate to the needs of qualified individuals with disabilities. Persons served must be informed that they have the right to receive services in the most integrated setting appropriate to their needs.”  For a copy of the letter, click here.

August 10, 2022
Spanish Language SDM Presentation

The following flyer was sent to Spanish speaking families of adults with developmental disabilities.

August 9, 2022
Survey Being Distributed to Stakeholders

The project is conducting a survey of agencies and organizations with an interest in promoting alternatives to guardianship and improving the administration of justice in guardianship proceedings.  We want to build upon the work that has already been done on these issues in the recent past in Missouri.  The first three letters have been sent to: Missouri Protection and Advocacy; Institute on Human Development at the University of Missouri at Kansas City; and Mo-WINGS (Missouri Working Interdisciplinary Network of Guardianship Stakeholders).  Other letters will be sent out soon.
Update: (12-9-22) Missouri P&A responded to our inquiry with a letter explaining its activities promoting alternatives to guardianship as a matter of policy, producing educational materials and forums, counseling clients, drafting supported decision-making agreements, and representing clients in guardianship proceedings.

August 9, 2022
Records Request Sent to Supreme Court

The project sent a request today to the Missouri State Courts Administrator asking for records pertaining to administrative actions that have been taken by the Supreme Court over the past several years to promote alternatives to guardianship or improve the administration of justice in adult guardianship proceedings.  The Supreme Court is responsible or administrative oversight of state courts and the state bar.  Meaningful guardianship reform will not occur in Missouri without the leadership or cooperation of the Missouri Supreme Court.  For a copy of the records request, click here.

The website of the Supreme Court explains: "In addition to making legal decisions, the Supreme Court supervises all the lower state courts with the assistance of its state courts administrator's office, which oversees court programs, provides technical assistance, manages the Judiciary's budget, and conducts educational programs for judicial personnel. The Supreme Court also makes detailed practice and procedure rules that ensure uniform handling of Missouri court cases, including times for filing motions and admitting evidence. In addition, the Supreme Court licenses all attorneys practicing in Missouri, maintains the official roll of attorneys, and disciplines lawyers and judges for violating ethical rules of conduct."

Update (8-19-22):
  The State Courts Administrator replied to our records request, stating that she is not the custodian of administrative records of the Supreme Court.  We therefore sent an identical records request to the Supreme Court Clerk today.  Update (9-1-22):  The Clerk of the Supreme Court sent a letter stating that the Court was not in possession of or the custodian of any of the requested records.  This implies that the Court has taken none of the actions mentioned in the records request. 

August 7, 2022
Review of SDM Progress in Texas

Jennifer Hulme and Thomas Coleman interviewed Richard Lavallo, Legal Director of Disability Rights Texas (DRT), about progress that has been made in that state in recent years to promote alternatives to guardianship such as supported decision-making (SDM).  We were impressed by the depth and scope of supported decision-making legislation enacted in 2015 and by what DRT and others have done to implement these measures in the educational system and in judicial proceedings.  We will be studying the progress that has been made in Texas and will issue a future report on how aspects of the Texas model could be considered in Missouri.  To access the references and resources on the DRT website, click here. 

Update:  9-15-22:  A new report from Disability Rights Texas (DRTx), Overcoming Civil Death, exposes the broken system that imprisons many Texans with disabilities in unnecessary guardianships that limit their freedom and independence. Many people with disabilities have the capacity to have their rights restored, make their own decisions, and be a part of their community. And in many cases, the law is already in place to allow this to happen. But due to various obstacles, many people with disabilities remain in unnecessary guardianships and experience what is known as civil death.  For a press release about the new report, click here.

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